CONNECT is a collaborative project between the Ludwig Boltzmann Institute for Lung Vascular Research, the Medical University of Graz and the Copenhagen Business School. The project aims to enable different users of medical research results to participate in the development of new research projects in an innovative and open manner. The process was started with a co-creation workshop in November 2019 where various user groups such as patients, relatives, therapists and nurses contributed with their experimental knowledge to the research expertise of molecular biologists and clinical scientists. Different prototypes were created together that will serve as templates to “translate” current research literature regarding fibrosis research. Parallel to prototype design, a crowdsourcing platform is implemented on which the „translated“ research literature can be accessed by anyone interested. The transfer of knowledge is characterized by transparency and the use of a simplified language, and thus allows the participation of different user groups in research. The crowdsourcing process is expected to identify persons who are interested to contribute their experiential knowledge in new research projects.
Grazyna Kwapiszewska, Ludwig Boltzmann Institute for Lung Vascular Research
Sarah Bundschuh, Ludwig Boltzmann Institute for Lung Vascular Research
Cooperation partners: Selma Mautner, Medical University of Graz
Please visit this Website [de] for more information.
The Political Economy and Ethics of Rare Diseases Research in Austria and Beyond
The question of how genomic information should be communicated to patients has been a hotly debated topic for a number of years. Our participatory project explores the experiences and views of rare disease patients and their families in connection (a) with how genetic and genomic information has been, and should be, communicated and (b) with the current pandemic situation. Our participatory approach includes rare disease patients right from the beginning as active participants of the research team: Thus, the research design will be co-created in collaboration with patients and patient organisations. The research team (i.e. the LBI-RUD project team + participating patients and family members) will meet for a series of workshops to develop a research design to explore the two topics. This means that participants will decide together on research questions, methods, tools for analysis as well as dissemination of findings. After the collaborative research design development, the research itself will be also carried out jointly. Depending on the outcome of the co-creation process, the research design could include interviews, focus groups, and surveys. Every member of the research team can be part of every step in the research process, e.g. conduct interviews or write about findings, but doesn’t have to be involved, depending on capacities and preferences.
Prof. Dr. Christiane Druml, Prof. Dr. Barbara Prainsack, Antonia Modelhart